Friday, April 15, 2011

Raising money for Neurological Rehab

(NOTE: This is the original post that tells Uma & John's story. I've updated it to include John's latest updates in chronological order, below this first update -- to make it easy for people who are just reading this for the first time to get caught up. Much love and thanks, erik.)

Dear friends and family,

It's been a really long time since I've sent out an Uma update. But this is an important one. She's about to start an intense neurological rehabilitation program (detailed in an email from her husband John, which I'm posting below) and I'm hoping to help raise funds to help pay for the program. Many of you know Uma well, but for those of you who are new friends and don't know Uma's story of survival, here's a quick Reader's Digest version:

Back in 2007, while she was in New York visiting her fiancé John, a musician who was in NYC on tour, Uma suffered a ruptured brain aneurysm. She was only 27-years-old. Uma was in a coma for several weeks, during which time she had a stroke. Her doctors told us she would probably die (they gave her a “20 percent chance of living” on two separate occasions). But Uma’s a fighter. She woke up from the coma with aphasia (she was unable to speak, read, or write) and with restricted movement on the right side of her body.

Thanks to the incredible generosity of friends and family and strangers, we were able to rent an air ambulance to fly Uma out to an in-patient therapy center in California, where she started learning how to walk and talk again, with the help of John, who’s always been by her side. They got married on July 14, 2008, in a beautiful ceremony in Eagle Rock, California.

For the last four years, Uma's full time job has been therapy. To get better. And the truth is: she has...to a degree. I've watched her improve in slow increments, but there are still huge neurological deficits that prevent her from being able to read, and write, and most importantly and basically, to express herself. The Uma who I know and love is there, but sometimes it feels like important parts of her are trapped inside her brain, if that makes any sense at all.

I believe that this program could be a miraculous thing for her. She's gonna need help to make it happen. Back in 2007, when she needed an air ambulance to fly back to California, we miraculously raised over $20,000 in less than a week. This new neurological program will cost about $80,000 (for six months of intense therapy) and even though that sounds like an insane amount of money, I believe we can raise it. Since yesterday, John's already managed to raise $1,000, so we're already 1/80th of the way there.

Any help you might be able to offer would be incredibly appreciated. If we can find 4,000 people who'd be willing to donate 20 bucks, then boom: we've made our goal. (And I know that sounds crazy, but I also know that back in 2007, the doctors told us Uma had only a 20 percent chance of survival, so there's nothing crazy about hope. Anything and everything is truly possible.)

Dream big, live big, HOPE big.

If you can donate more than 20 bucks, that's awesome and amazing and much appreciated. If 20 bucks is way too much for you right now (and believe me, I know the feeling), even a five dollar donation would help. Thank you in advance. If you can't donate right now, peace and love and blessings to you still. Please forward this message to friends, repost it, retweet it, facebook it, print it out and tape it to the fridge in your office, any way you feel comfortable spreading the word would be awesome.

And please read John's email below -- it's long, but gives a much clearer picture of Uma's current condition and how much this program could help. There are links to donate through paypal down at the very bottom of this email.

So much love to all of you,

Erik

Here are some photos and videos of Uma that show some of her recovery process, and the love story that has continued to unfold throughout her journey, between her and John:

MESSAGE FROM JOHN:

Everyone,

This is going to be a long email and, as I said late last night, the most important one I've ever written to you about Uma. Please take the time to read it. I'm asking you to do this, please.

First - there is not one single person in her family that is currently in contact with her (if even by email) that is in any way at fault for where she is currently. Her current family, especially her father and aunt Dharshi, have been one of the main reasons I am still sane and involved in her life.

Let me start by saying that Uma is now in great danger regarding her meaningful survival and in potential danger regarding her survival in general. How this could be given the fact that she has only improved in her stroke recovery is explained below.

She had, in fact, only improved in terms of her basic stroke recovery. She speaks, walks, and moves her right arm better now than she has as any time in the past (current medical set-backs aside). For those of us who take for granted our ability to speak, read, write, walk, drive, run, understand, have some emotional control, open a door with either hand, fasten a button, go to work, pursue happiness, and think clearly this is enough to have a good life. For any of you who can imagine for a moment what it would be like to lose even one of the above listed items, you can see where Uma's life (having lost all of the above) would be unmanageable.

I have made mistakes in trying to guide her care. This haunts me daily especially now as I see her in severe crisis. I have never been married to nor had to care for a victim of stroke but I'm still disappointed in myself for not seeing earlier what I see now. Can't go back.

I did what I was told to do from therapists, doctors, the internet. I drove her to countless hours of physical, occupational, speech, and behavioral therapy. She ALWAYS went along, ALWAYS tried her hardest, ALWAYS looked forward to more therapy, more help. But the help she was getting did not take into account one crucial piece of the recovery puzzle: her traumatic brain injury.

The following quotes are from her neuro-psychological evaluation of July '10....slowed information processingreduced memorysuffering from non-diagnosed depression/ptsd secondary to multiple early life experiences and......abuse. (please re-read the second sentence of this email re: her current family)nervousness and anxiety related to loss of functionInsight, judgment and abstract thinking were poorMs. Nithipalan performed below expectation on most neuropsychological measures for an individual with her education, employment, and achievement backgroundIntelligence: borderlineAttention and concentration: impairedSpeed of information processing: unable to adequately assesslanguage: impairedvisuospatial/constructional: borderlinememory- verbal: impairedexecutive functions: impairedemotional functioning & quality of life: depression, anxiety, tensionproblems with reasoning, fluid problem solving, attention & concentration, language, memory....will have significant difficulty with verbal communication as well as understanding what is communicated to her...will have difficulty recalling verbal information...patient will be severely challenged to retain information and recall it later.Emotionally, Ms. Nithipalan reports multiple early life traumatic experiences....... all findings are congruent with cognitive disorder.

...you get the picture? No matter what therapy she does to improve her life, it will not sink into her brain permanently without brain-injury specific expertise.

This is important because no one she has encountered so far has had any real experience in re-building her brain on a holistic level. Yes, she can recognize letters better (but still cannot functionally read/write), and can move her arm better and can walk. But she does not know herself or her limitations....she knows who she used to be. And she knows that she is not that person now. But her cognitive deficits prevent her from taking action independently to improve her life or even her mood or attitude.

It's hard to imagine isn't it?

At one of her speech therapist's office I participated in a family assignment: tie my right hand to my pants and attempt to complete certain basic tasks....and the tasks were written on paper the way a person suffering from aphasia (alexia, agraphia) might see them....i.e. mixed up letters, words where the ink fades midway through, directions in German, Mandarin, huge blank spots etc. After about 20 minutes of that it became much easier to imagine what Uma's constant level of frustration might be. I wanted to read the directions and complete the tasks, but the words on the paper disappeared or switched language or were gone. And then when I could divine what the task was I had to do it with my left/weak hand. Exhausting.

I can't tell you how many times I've heard a doctor or therapist say something to her like, "Make sure you follow all the directions on this sheet of paper" or "You're just going to have to come up with your own strategies to deal with this" or "hang in there, Uma!"

Gabrielle Giffords, the Arizona law-maker who was shot has a traumatic brain injury. Because she is in the government, she will get all of the best TBI based therapy for as long as it takes for her to function adequately again. But there is no civilian medical insurance plan available that duplicates this level of care. They all stop payments at some point long before the patient is anywhere close to being where they were before the injury. The insurance companies will cover for medical expenses, post-cancer chemo and even reconstructive surgery so a patient feels more normal. But there is nothing for the restoration of meaningful life after brain injury.

There is, according to my research, three places in the United States that can help Uma. These facilities deal only with people who've had traumatic brain injury (stroke, car accident, etc). They treat the patient individually and have great specific experience finding ways to reach each one. With TBI there are no real generalities. The brain is amazing and at once amazingly robust and fragile. Each brain is different.

Uma's Aunt Dharshi and I have thoroughly checked this place out and are completely satisfied that this is the answer for her.

I am convinced that it is the last chance she has to recover. And I'm not just talking about her stroke. Because some of the things affecting Uma are deeply personal and traumatic to her, I can't go into more detail. Suffice to say that, prior to her stroke, some of the worst things that can happen to a female at any age happened to her. Her reduced cognitive functioning has caused her to seek relief in the most dangerous ways for her. Her current therapist said, "Uma, this........could lead to your death."

Uma is in trouble. More trouble than four years ago. Core Health can help.

Why them? Why Texas? Because the equivalent in California costs $2000.00 per day. (What is up with that?!)

Core Health is about $500.00 per day. Sounds like a lot of money.

Let's break that down:

private room .......$125.00 per day?three meals .......$40.00 per day, maybe?5 to 7 hours of cognitive, substance abuse, ptsd, speech, physical, occupational, vocational, individual and group therapy 5 days per week by experts in the field of TBI? ...I'd give everything I have now and everything I'll ever have to get that for her. (and I probably will) Not to mention sleep studies, psychiatric care etc etc.

It is estimated that she'll be there for 6 months. (She can fly home on some weekends and I'm already scouting road trip, amtrak, and planes to visit as much as possible).

The math? Yeah, I know. It seems impossible. How can we raise that kind of money?It's about $15,000.00 per month X maybe 6 months. It's a lot of money. But it is possible to raise.

In March of '07 Erik Patterson had a blog and managed to raise over $20,000 for Uma's air ambulance back home. This was done in just 8 days. (Power of the pen!) But I think it was done because people responded so keenly to Uma's predicament and to the deep love and concern those in her life displayed. (apparently people love real love)

Things are more crucial now. She needs this kind of help to have a life. I can't put it more simply than that. She needs this and we're going to get it for her. The reward will be her restored life. It's worth it.

I have estimated that over $80,000.00 has been spent on her recovery so far. I think her life is worth that. I think her life is worth raising the money for Texas.

In the last fund raiser people gave generously. Strangers sent in, for example, $6.42 to my paypal account. Maybe they were rounding up a phone bill.

She needs this again.

I gave up my pride after the first sentence of this email. If you've read this far then you know that I am actually begging for help.

Paypal is an easy way to donate money to her. (NOTE FROM ERIK: paypal links below)

We need to get her to Texas as soon as possible. It's as simple as that and I'm sorry I can't go into more detail as to why things are as desperate as they are. It's my hope that, when she leaves there and her life is restored, I'll be able to finish my book (along with her help) and you can all read about it in great detail and know that you were instrumental in bringing her back.

Please help us.

Love,John

AND NOW, THIS IS ERIK AGAIN:

We are collecting donations via PayPal. If you don't already have a PayPal account, please follow the simple instructions (listed below) to open an account. It literally takes 1 minute. Then click on the SEND MONEY tab and send your donation via John's email (john.ballinger@sbcglobal.net).

NOTE: If you prefer to donate via check or some way other than paypal, email me at dimsumday@gmail.com and I can give you an address to mail a check, etc.

HOW TO OPEN A PAYPAL ACCOUNT:

(My grandmother asked for "explicit paypal instructions," so I'm going to make this as easy as possible.)

Select "personal account," select which country you live in, then click on "continue"

Enter your personal information, choose a password, then click on the "I agree, create my account" button at the bottom of the page

You will receive an email from paypal. Open the email, click on the link, enter your password, and voila, you have a paypal account. (See Grandma? Very easy.)

THEN, TO MAKE A DONATION:

Click on the "send money" button

Enter John's email in the first box (john.ballinger@sbcglobal.net), the amount of your donation in the second box, in the "category of purchase" box you should select "cash advance," and then fill out the other boxes as you please. Then hit the "continue" button.

Then you should be brought to a page that has your "payment details." If everything looks good, click on the "send money" button, and you're set. Paypal will then send you an email to confirm that the payment went through.

And again, thank you, thank you, thank you.

Update from John, 4/18/11:

Everyone,

Something miraculous has happened since I sent my long email. We’ve managed to raise enough money to cover the cost of the first month of Uma’s therapy in Texas.

We had a conference call with them this morning. I was listening to them as much as they were listening to Uma. The first thing they wanted to know was whether Uma could tell the difference between “regular” or tension headache and something much worse – aneurysm headache or seizure headache. Good for them – this is not a regular hospital and they’d have to take her somewhere else for medical help.

The call was a success in that we all realized that she is a great candidate for their program. They felt that they could really help her. At one point they were asking her about whether she would feel motivated to attend all the therapy sessions. Before they finished the question Uma blurted out, “I LOVE therapy!”The doctor said, “I don’t think we’ve ever heard that before!”

The rest of the day involved getting a large check (from the Evidence Room!) cashed and getting other cashier’s checks (thanks mom and dad) deposited at my credit union to obtain the ‘big’ cashiers check for the clinic. The teller asked me what the money was for. By the time I got done explaining I learned that her father also had a stroke and that she was going to donate to our fund.

News about that fund (and your name if you’ve donated) can be found here –

Again, just like last time around, I’m getting donations from people who’ve never met Uma. Many donations are under $20. Some are from people I know to be pretty broke themselves. A few have come from people with serious or even fatal disease.

My own family (and extended Angel family) has been generous beyond any expectation.

We are both excited and afraid. I will miss her terribly. Even the recent hospital bed, surrounded by clatter and nursing in the halls, sirens at the E.R., and ‘vitals’ every 6 hours, I felt at home holding her. As I said at our wedding, she is my home, I’m her shelter. It’s still true, it’s more true.

We have a pain-management appointment tomorrow at Cedars at 8am, drop off the score to the guitarist subbing for me at my job, drop off the dog, fly to Austin at 3, check in to the clinic Wed. at 10 am, then I fly home Wed. evening at 5pm.

We are bending a new, vitally necessary corner in the road and we could not have done it without all of your prayers, thoughts, and your concrete, rock bottom financial support. Thank all of you forever.

Dear friends...I'm writing to let you know that Uma is in Texas, where she began her neurological rehabilitation on Wednesday. I'm forwarding John's email update with details about her first day there below. But the main reason I'm sending this email is to say thank you for making this possible. Thanks to the over 400 people (and counting!!!) who have donated, we've raised enough money to pay for the first two months at Core Health! Amazing & inspiring. Thank you.

We're still trying to raise enough to cover 6 months worth at Core, so please continue to spread the word, forward emails, post updates on Facebook, Re-Tweet Uma updates on Twitter, and send good vibes and love to Uma, who's off in Texas doing this alone, and being incredibly strong and brave. We're also having a musical benefit on Sunday May 1st at the Bootleg Theater that will be a fun party and I'll send out more specific info about that in the next day or two -- but save the date!

Huge, mountainous chunks of love to all of you,

Erik

MESSAGE FROM JOHN:

Everyone,

On Tuesday we flew together to Austin, TX. Wednesday morning found us at Core Health speaking with all of the "intake" people there; coordinator, money guy, psychologist, physical therapist, staff supervisor, and even the cooks. I was there at the facility for about 2 and half hours before needing to get back to the airport. Uma stayed.

All my questions and concerns (and I voiced all of them to everyone) were answered without any hesitation at all. There was absolutely nothing in Uma's history or in her particular set of needs that surprised them at all. Even after I explained to the coordinator and money person that hundreds of people are going to be watching their every move (in so many words) they didn't blink. I came away from those meetings with the feeling that Uma had found the right place.

She has a sizeable private room with a large half bath. The shower is down the hall. All are located in the building where Uma will do the bulk of her work. This is not a huge, sprawling, shiny new hospital. It looks and feels like a place where people work hard.

There are a lot of staff per patient here and one of the main differences with Core is the communication between therapists. They all know what the others are doing, what the particular safety and therapeutic concerns are for each patient. This coordination is very key to recovery.

After watching her initial evaluations (and showing everyone her video footage from Jan. and Feb.) I felt very secure in leaving her in their care. She felt the same. The most difficult part for me was actually walking out of that building and driving to the airport. I feel like this is going to be a long journey for her but the most important of her life. I feel that if she does well here (and she will) she will emerge a more confident, much deeper functioning, and happier person.

I called her when my plane landed at LAX. She said, "someone comes by every.....all the....every one, two hours....." which I eventually realized meant that the staff check on every patient throughout the night. (there are audio and video monitors in the building, outside doors have alarms) I told her how proud I am of her for being so hard working and so brave to continue this struggle. "Do you feel safe there, Uma?"

"I think so....."

She called the next morning and said she'd slept like a baby.

I didn't hear from her again until after 7pm her time Thursday. I rang her cell phone. The first thing I heard was, "Oh my god, man........the work!.....wow!" She went on to explain how busy she was but also how different things were there. She said, "...the speech!....(speech therapy)....it was so great!...it was like I was a kid again learning......I was like 'oh so that's it.'" And about the gym she said, "A lot of people were doing one, two things but I did, like, five things.......my a** is gonna hurt tomorrow!"

So - having been accused of writing too long of updates I'll close by saying that she feels like this place is really going to work for her on every level. She loves the psychologist and says, "Right now I'm scared......I'm not interacting....but it's just like Oxy (her college)....I'm going to make friends but not right now. I need to......to....to....." "What? Get used to the place?" "ExACTly!"

In the first week of fund raising I received dozens and hundreds of emails with money attached. And while that has dwindled down to just a few per day now, they include notes from strangers, "We don't know you and Uma but are very moved by your story. We hope this small donation helps in some way." And they gave $20, or $40. Even the California Highway Patrol donated money (Thanks Jill!). Besides my own family, without whose help she would not be there, some of the most generous donations came from people who have brain injury in their own families. These people identify on a deeply personal level with Uma's loss and the difficulty it has brought to her life and the life of our family here in Los Angeles. It's been truly amazing and, frankly, hard to believe how quickly and wonderfully people have responded.

Last night before I played my theater gig one of the actors (who donated) stopped me and said, "So....I hear Uma's in Texas?" I said, "Yes, she is. It's a great place for her....and you bought her some time there. Thank you." That's my message to all of you; you've bought her time to recover her life.

As I left that gig I realized this is the first time I've played the show and am not driving back to a hospital.

So far, so good. We have raised enough money for almost two months but it is most likely that she'll need far more than that.

For me there is no "more truthful" or "less truthful". There's just the truth.

The truth is that Uma needs this in order to restore her life. Thank you for giving of yourself to help her. Please pass this email along to anyone you like. More later.

love,John

For past Uma updates, you can visit the Uma archives from my old blog here:

Thanks to the awesome fundraiser on Sunday, where we raised $6,506.01 (!!!!!), we're now halfway to our goal of raising $80,000!!! Please keep sharing Uma's story with your friends. If you're just coming to this blog for the first time, please READ THIS POST for more details on Uma's story. So much love and gratitude to the many friends, family, and lovely strangers who have helped so far. Uma is working hard in Texas! They went away to a camp last weekend, for some therapy out in the real world. Check out the incredible photo below of her climbing a wall!

For those who have been following their story, here's an update from John. And thank you all for the continued support.

JOHN'S 5/14 UPDATE:

Everyone,

Uma is asleep beside me here at the Outpost Motel in Dripping Springs Texas. This is my third night with her.

When I arrived at Core Health on Thursday night I saw Uma in the break room playing Scrabble with one of the staff. She looked very, very different than the last time I'd seen her almost 5 weeks ago. Her face was bright and even, her movements were quicker and balanced, her eyes were clear.

In terms of recovery the first thing I noticed was that her walking, her gait were back to where they were before all the trouble in March. Other improvements are less apparent but I can see them.

Before we left Core on Thursday night Uma had to get her "meds" taken and packed up for our weekend off campus. The first of several patients (clients?) were introduced to me as I waited in the small hallway outside the meds room. What struck me the most, what I came away with that night as I drove us to the Outpost Motel was how broken these people's lives were. We're talking motorcycle and car wrecks, brain aneurysms and strokes. Everyone is different - some can't walk, some can't even push their own wheelchair, some speak and move well but can't open one eye, some have misshapen and severely scarred skulls. There are varying levels of self-consciousness emanating from each one. It began to dawn on me how lucky Uma was; she lived, she can walk, she appears to be what most of us would call "normal" (an over-rated moniker to me - maybe not so over-rated to some of the clients here). And she has not only me, but our families, and all of you. As I learned in the next couple of days, many of the clients here have been and remain alone.

I attended most of her therapy sessions on Friday. The first was a social skills group. The therapist worked with a strategy of role-playing; one client is a grocery clerk and has been instructed to be distracted while another client has to ask for (and get) an item. This is exactly what people like this need to practice. It involves so much simultaneous mental effort that you and I take completely for granted. It's the "lab" work associated with the "classroom" or one-on-one speech therapy.

The therapist had a steady, pleasant, unwaveringly positive approach and attitude. After my experience Thursday night I thought to myself, "How does she do this?" How does she deal with all the stuff in the room that I can't ignore? The loss, the pain, the rage. Is it just training? Or is it also an affinity for the job?

Other therapy that day (a relatively light one according to Uma) included vision exercises aided by a computer program (Uma ignores her right field of vision) and a cognitive skills group.

There have been 3 amazing things Uma has said (so far). On Friday as she was drifting off to sleep she said, "so.....the house doesn't matter..."
I said, "what do you mean? the house?"
"the.....uh......the house.....you and me.....what we stay in...it's us."
"Oh, you mean it doesn't matter where we are, we still have our 'home' when we're together?"
"Exactly right!"

On Saturday we woke up late, went to Thyme and Dough (the things we all wish we had more of, right?) for breakfast and then headed back to Core for the carnival. A moon walk, dunking tank, water balloon toss, and egg walk were all set up, among other things. Uma did all of them and won some over-sized sunglasses. I took video of it. Hopefully we can post this to Erik's blog soon.It was fun. I didn't expect it to be but the positivity of the staff was pretty infectious.

I spoke briefly with one of the VP's who had returned one of my rather strident phone calls made about two weeks ago regarding how "light" Uma's schedule appeared. (It was rather strident for me -- probably "rabid dog" for them!) It turned out to be a communication mishap (from my side as well). I apologized again, was reassured again, etc. I offered to sit in the dunk tank and let the staff takes turns but I was declined...:)

After the carnival we made a Target run and on the way Uma said, (this quote is verbatim) "Sometimes I get so emotional because you stayed.....after my aneurysm and a stroke."

Tomorrow we will hike around Pedernales Falls. Monday is a full day of therapy and I'll be able to stay with her until about 3pm. Can't wait.

It's "small town" here. There's quite a bit of "y'all, ma'am, sir" etc. The people here are friendly. I thought at first how rare that is where I live and then realized my mistake. The neighborliness just takes on a different form for us: I don't leave my dog with my next door neighbor while I'm gone....I drive him four miles to Alec and Jamie's. People don't pop in, say "hi" and help Uma with some task....they (all 5 or 6 hundred of them) donate thousands of dollars to help her recovery her life.

It's positive everyone. It's a good, good thing that she's here. You've all done a really great thing in sending her here. Thank you so much.

Love,

john

####

5/23/11 UPDATE

From John:

Everyone,

It's been awhile since I wrote. I realized the other night that the reason I haven't is because I've been feeling so normal, and relieved. I haven't felt this since of well being in over four years.

Uma is doing very, very well at Core. I think this type of help for her was exactly what was missing.

What I saw two week ago there was her deep in the process of finding herself, of discovering who she is in the present time and how to deal with, accept, and improve upon what she has in her life now.

She always arrives for therapy on time or early, always has her notebook with her, can't wait for the work to begin. She sees this as the absolute recovery of her life and so do I.

Her walking, balance and endurance are better than earlier this year. Her hand therapy is very aggressive and implements some of the techniques that the people in Berkeley, use. Her sentence structure when speaking and all of her word-finding is improving very quickly. I completely expected this out of her.

What I didn't expect to see was her encouraging the other clients. As I said in a previous email, some of these people are tremendously banged up: motorcycle, car, military accident etc. and they are, for the most part, alone. Many of these people have family but they don't come to visit. A lot of these people have lost hope.

At the carnival I saw Uma get (ok - force) one of the girls in a wheelchair to do the egg walk with her. She rallied a staff member to push the girl through the walk. At one therapy session I heard her say to a discouraged client, "You mean you just want to watch TV for the rest of your life?" He replied, "Yeah....who cares?" Uma tilted her head to one side and said, "Awww come on....there's more to.....to......it than that! You have to DO stuff!"

A few days ago she said to me, "When I come home I want to do something meaningful...."

One of the most important things she's learning is to see how her minds operates. She can look into the future at specific events to come and is learning to prepare herself mentally, emotionally, and physically for them. This was missing for her. Again, it's one of those things most of us take for granted, one of those things she lost and is regaining.

There's no denying that this recovery is going to take a long time. The only thing exponential or immediate about Uma's stroke recovery was the fund-raising. You all need to see that for what is was: a miracle. You who donated actively took part in a miracle of altruism. It went very, very well.

We have enough to take her through about the middle of July. I'll know more for sure in about a week at the next staff conference for Uma, but I'm guessing she'll need to be there at least until the end of September. I"m still working on all aspects of getting the funds together and infinitely appreciate your generosity.

I don't think I could've imagined a recovery process more suited to her injury than where she is now. Thanks from my heart for putting her there.

Love,

John

####

6/2/11 UPDATE:

FROM JOHN:

Everyone,

The problem with increasing your self-awareness is that it could lead to becoming self-aware. It can be daunting in the best of circumstances.

I think I can make a good argument that Uma's circumstances are not ideal.

It has been truly miraculous how people have responded to her need for this rehabilitation. People from every facet and time in her life have given a precious resource to help her try to put her life back together.

I know that my writing, Erik's writing, everyone's texts, tweets, and facebook posts have inspired a large contingent of love and donations. But I don't think anyone would have given anything if they didn't believe Uma would do everything in her personal power to participate aggressively in this process. She is doing that.

She is digging in, showing up, trying, struggling.

For those of you with no trouble in your life, no bad habits, and nothing to improve, just skip the next two paragraphs.

Imagine yourself at a place that is not your home, away from family, and pretty much in one building 24/7. And in this place you are going to attend with deeply active participation and cooperation about 35 hours per week of work. The work you'll do will be to delve straight into every single area of your life that is troubling you. Imagine your worst traits, habits, secrets (even the ones you keep from yourself) all being exposed in front of many people and therapists for the sole purpose of improvement/healing. Imagine that you have no earthly idea how long this is going to go on and that for every 90 days of intense work you move an "inch" toward fulfilling your goals.

Now imagine that your "trouble" is that you can't open or control your right hand, can't turn your right wrist, jog, sleep very well at night, remember things said/taught to you yesterday, or read this sentence.....and imagine that you know that a lot of the brain you were born with is permanently gone, but that you remember precisely what it was like to have all that brain intact.

Uma is awakening to the bitter truth of her existence. She has been working incredibly hard for years but is now in a place where there is no "escape" from rehab. When she's done with her grueling day she doesn't come home to me. She realizes that after more than six weeks at Core she is improving but it is slow. After 6 weeks she is speaking somewhat better and her hand is looser, less spastic. But she still can't do so many things. The slow pace of her progress is the result of the severity of her injury and the physics of the human brain. Nothing about stroke recovery is exponential or immediate.

What is emerging, what is most difficult for her, is her renewed awareness of the passage of time. There were so many things lost for her after her brain injury and this was one of them. She had less awareness of the effects of time. This is changing and it's not all good right now. It's mixed. The "long haul" of this is weighing on her. She's always had an awareness of the amputation of her full function, but now she is facing it, her eyes are fully open to it. I don't believe you can emerge into something like this without significant growth and courage. She has both and is not giving up, slowing down, or caving in. She still can't wait to go to the next session.

Watching her go through this is very mixed for me. I so wish she could've been spared this struggle but know that, for her, there is either this struggle or a non-life.

There are two miracles: she lived through her burst brain aneurysm, and she has been supported by all of you. The rest is trench warfare.

I thank you again for helping to put her at Core. (I wish I could invent a word besides "thanks" that carried the weight of all my gratitude. Sometimes "thanks" seems so light). We have funding 'til about the middle of July. We will need it for much longer than that.

I'm leaving for New York for work this weekend but promise to find a way to post video and photos of my last visit with Uma. I think it will help show you that she is, in fact, going to make it.

Love,

John

####

6/9/11 UPDATE

Dear friends...I'm forwarding an update from John about how Uma's doing at Core Health in Texas (spoiler alert -- she's doing really well), but first I just want to thank all of you for your incredible support...the donations, the well wishes, the prayers, the love, the hours that many of you put into the fundraiser at Bootleg last month -- it's incredible and moving how so many people (friends, family, and strangers) have come together in a really miraculous way. So thank you from the bottom of my heart. Huge, huge love to all of you. xo, erik

JOHN'S LATEST UPDATE:

hello everyone,

Uma is doing very well overall. I think the main thing she's experiencing on the positive side of things is a sense of hope that she can emerge from her stroke with the ability to have a life that she considers worth living. On the tough side of things she's experiencing a new and more accurate vision of how long it's going to take her to get what she wants.

I'm leaving to see her again tomorrow morning. Can't wait. I miss her so much.

She misses acting.

We talked yesterday about it - she said she wanted to "do Shakespeare"...just get a play and start to memorize lines. I said nothing but encouraging things to her at that time. Later on in the day I left a message for her on her cell phone, suggesting that she consider telling her own story instead of someone else's. She calls me every night after her dinner. This night, after I answered my cell with "Hey!", she burst in with, "Oh my god....that's it, man.....MY story....I never did that......not even with Bart DeLorenzo and the Evidence Room!" On my last visit I gave her a little digital recorder so she could record her thoughts. She's going to try to begin creating what I guess will be a one-woman show at some point in the future.

We talked further about other things......hoping for a brighter future despite the fact that there is so little work for me (thank god for piano tuning - although I keep thinking I'll be able to fully step away from that someday). We also talked about how long she'd be there at Core.

Today she called just as I was finishing a piano tuning. She said, "Ok....I'm just gonna say this one thing, ok?......even if we're penniless, we're still in love." (that is a verbatim quote). I think we can all agree that there are far worse people on earth than Uma.

Two days ago we had a conference call with all of her therapists and her case manager. It lasted about an hour and covered every aspect of her care. I spent most of the time speaking with her hand therapist - I needed to be convinced that she was getting somewhere with that part of it. I can tell just from phone conversations that she's improving in terms of her speech, and I know from her gym schedule that her leg, foot, balance, and stamina are improving.

Every therapist had the same reaction to Uma; they think she's pretty amazing, with nothing but potential for recovery. They are excited to work with her. They see improvement, enthusiasm. One of them told me how Uma basically dragged another patient (who rarely comes out of his room after therapy) out to the common area to play a game with her. Her hand therapist told me that on one day after therapy she, the therapist, actually started to dance around a bit because she was so excited about what Uma was accomplishing.

She's getting real help here and after over four years of trying to get her what she needs and only marginally succeeding, this is a real blessing. Thank you all for what you've done for her and for our family. I hope this email can reach out to where you are with my thanks...this is not a small thing....it's one of the biggest things, bigger than I could ever have imagined. Another way to say it is that it's beyond me - literally - what has happened for her because of all of you is outside of me, of my power, and beyond my own love for her and my hope for her future. I was losing hope in March but now I have it again and so does Uma.

The conference call ended with an estimate given for her discharge. They said that, at minimum, she'd need to stay there a total of six months. We, all of us, have raised enough money for just a bit over three months. The money is out there - we just need to bring it to Core Health.

A very talented theater ensemble is having a benefit for Uma on Wed. June 22nd here in L.A. Please do check out

These are enormously talented people who will make you laugh extraordinarily hard. The whole night's proceeds go for Uma's therapy. Two of the people who run this theater have been just simply nuts-generous for Uma already...and now they're pulling this night off. I'm glad I'll be in town to go see this. I could use a good laugh.

and also http://www.theumafund.blogspot.com/ (if for no other reason than to search for your name among those who've donated).

I've been very busy trying to hustle work and use that as an excuse not to update on Uma's life. No more. I will inform you all much more regularly from now on.

All my thanks and love,

John

####

6/27/11 update:

Everyone,

I’m waiting at Austin Bergstrohm airport for my flight home. Instead of spending the weekend again in Austin we opted for Fredericksberg. It’s a German town in the middle of the Texas hill country. Damn hot! It makes a wall air conditioner the greatest luxury on earth.

When I first got to Core on Friday afternoon I saw Uma playing scrabble with a staff member in the rec room. She had blue and blonde hair – Uma, not the staff member. She said, “I wanted to shake things up!” In August we’re attending a wedding in Canada for her cousins. She says she’ll dye it back by then. I really don’t care. She’s the most beautiful woman in the world to me.

She’s doing very, very well. It’s slow, grueling work but she never shirks it. She enjoys the weekends when I’m there and actually gets excited to go back to “work” on Monday morning. The only thing she doesn’t like is the weekends when I’m not there – she has little work to do then. But she’s working her mind and body so hard that she actually needs the rest.

In some ways, just like the TV news, it’s so much more easy to report the horrible things, the tragic things. But it would be a bad thing on my part not to tell you how well she is doing. On top of her speaking, walking, and range of motion increase in her shoulder and hand, her spirits and her emotional state are stabilizing. You can imagine the attitude and perspective shift you’d undergo in her circumstances. Despair permeates. It’s a constant battle but she fights it and gets better at fighting it all the time.

Last week the Burglars of Hamm theater company held a fund-raiser for Uma at a local theater called Sacred Fools. It was hilarious, unique, smart, raucous. Just over $3000.00 was raised. That’s six full days of housing, board, and 30 hours of therapy for Uma. In reverse chronological order I have to publicly thank: Sacred Fools, Burglars of Hamm, Matt and Carol Almos, the Bootleg Theater, Tamar, Erik, Jessica, Alicia, Marie, Eleanor, (ok this is going to get ridiculous because so many people have been involved in these fund-raisers), Silvie, Phil, the bands, the crew…..wherever you found the love in your hearts and the time on your hands to help Uma, that truly is a divine place. May it grow and bless you, too.

I want to tell everyone how wonderful my family is. My cousins, aunts, uncles, nephews, brother, sister, in-laws – all contributed and continue to contribute to Uma’s health. Not small contributions. This is generosity personified. These are great, great people and I can’t wait to see them and thank them in person two weeks from now at our annual family reunion.

When Uma collapsed so violently in front of me four and a half years ago, the first chance I got to call someone, I called my parents. I didn’t call a friend or another doctor. When they finally took Uma back into surgery I called my mom and my dad. Why would I do that? Because out of all the people on earth, I knew they would speak to me with true, lasting love. I knew they would share my pain with me and lessen my burden. I knew they would be there for me. They have always been there for me from my first cry until now. I’m as full grown as any man that ever lived but I’m still their youngest child, their youngest son. And now that I’ve had to sacrifice on behalf of someone else, I have a small inkling of what they’ve gone through for me, what it has cost them, and what joys and healing it has brought to their lives.

To my parents, my family, my extended family, my theater family, all the strangers that have donated to Uma that are now my virtual family I want to tell you how full my heart is with thanks. She is beginning to live fully and we could not have done this without each of you.

All my love,

John

####

9/1/11 update:

Uma update 9/1/11

Everyone,

Lots has happened.

Uma was moved from her original living facility to different building. The new building, Draper, has only 6 others living there in private rooms but the reason patients get moved here is due to their advanced level of independence.

At Draper everyone cooks their own meals in a fully stocked kitchen and has to cook dinner for all Draper clients one night per week. There are far fewer staff members per client and all the clients have living and cognitive skills that are, for lack of a better or more compassionate term, normal. I’ve always know Uma to be the hardest worker in any group including before her injury and I have great faith in her full recovery. But what this move does is help prove to her that she is gaining ground. Of all things this is of great importance. All Uma requires to recover from this stroke is a continued sense of hope. She already has all the drive, eagerness, and willingness to do and endure absolutely anything necessary. Hope is the fuel for this fire and the new living facility helps a lot with this.

On the wall next to her bed is a 3’ X 8’ piece of yellow construction paper and it’s full of photographs, cards, and words from and of her friends, family (all families – including extended), and herself at various stages of her life. Today, right before I said goodbye she pointed to the yellow paper and said, “Look at this…..every morning I wake up and see this.” On her desk are all the cards made and sent to her. So – now you know you are there with her as always.

They’d like her to get a job eventually in Texas before she returns to L.A. She’d probably work on the weekends. And they’d like to get her a driver’s license as well. These are two pretty important things to take home in the end….before she starts her brand new life in L.A.

I want to say again, THANK YOU! to ……how do I do this? Over 1000 people have give money to Uma’s recovery. To all the individuals, the strangers, the theater companies, friends, my family, Uma’s immediate family – dad, aunts, uncles, cousins – my aunts and uncles, my cousins, my friends….everyone. Every time I think of all your help and love I get a tight feeling in my chest that is not at all bad and my eyes water. I’ve seen the absolute best of humanity represented time and again by all of you. You’ve made it possible for us all to see Uma’s humanity again.

As always, with all my heart, thank you.

More to come in a week or so. If I come home from NY in October it means I’ve had success in a very nice project. If not, it means that success is merely postponed. Wish me luck!

John

###

9/11/11 update

Everyone,

I'm in New York the last few days getting the musical I co-wrote up to speed for performance. Today is 9/11. The city was very subdued, very quiet, trains were late or not running, and there were a number of police check points at various places.

When I first arrived here on Friday from another musical project in New Jersey I felt an odd sense of dread. It took a few blocks of travel to realize the source: almost five years ago many dreams were lost for Uma and I here. The memory of that day is always in my mind, always within reach. Her collapse in the hotel, the ambulance, the ER, the news. I can still see, hear, and even smell the hotel lobby and I can see myself hugging and shaking hands with all the musicians and dancers from the tour as they filed out to go to the next gig.

There's been at least a novel's worth of emails written since then, many thousands of dollars donated to Uma's recovery, and many more deeply moving displays of support for her and for me. The love shown to us by family, friends, and strangers is truly one of the best reasons to call ourselves human. But more remarkable than all of this is the effort Uma has expended to get her life back.

She never stops, never quits, and she always, without fail, only improves. Again - the deepest thanks for your support in helping to place her at Core Health in Austin. The efforts you and she have made are paying off.

Every month I take part in a conference call with all her therapists and case manager. This last time I heard the news I'd been waiting five years for: Uma can voluntarily move the fingers on her right hand. Not much, not like you and me, but she can do it. No hokus pokus, no special intensive "hand-only" therapy - just time and effort, skill and patience. She can extend her fingers and wrist a measurable amount. Of use? Not yet. Significant? You bet you life.

I always knew she'd get to this point but she didn't. This is concrete. It gives a foundation to all the hope and is the best "thank you" to all of you for your help.

Besides this, she is speaking so much better and jogs a little further each week. Her speech therapists are now concentrating a great deal on reading. And she can now feel her right hand. How do we know this? Because she complained of it hurting.

One thing is clear: she needs to remain at Core for a longer period of time. I will keep you all updated as often as I can. My work hours reach well past 14 each day but some news can't wait.

All my gratitude and love,

John

# # # #

12-16-11 update from John:

Everyone,

Acceptance. It's been a long time coming and may not be a permanent visitor....but I hope it is a frequent one. It's very welcome.

My Uncle Terry and I had a conversation about using the word "recovery" and I've decided to try some different words. As he said, "Language is everything."

Uma is reorganizing. So are the people who experienced hurricane Katrina. Once the storm stopped, their work started. It's still going on and will go on for many years.

It's the same thing for Uma. A storm of blood and loss swept through her brain and "washed" away two thirds of her left hemisphere. In both the most basic and poignant ways, her reorganization will continue until she dies.

The brain does form new neural pathways but this doesn't happen over-night....or over-year. It happens more quickly the more the brain is pushed to reorganize. And Uma has been pushed.......a lot......mostly by me. Fortunately for both of us she is learning to push herself now. And I am learning to let go.

In many ways the most important things that have happened for her here at Core Health pertain to her inner life. As she said, "I had to do it by....uh....for myself....not for John." I agree. By, for, because of herself? I'll take all three and more. She has learned to focus on herself, on what makes her "tick". She is learning to be honest with herself, to observe herself, and to accept what has happened to her.

As I alluded in my email in April, there were tragedies for Uma long before her brain injury. If these things required good care and time before her stroke, they'll require more specialized care afterward. Finding a good "shrink" (as she says) who has experience with traumatic brain injury is really not easy to do. It is a specialty that very, very few psychotherapists go into or encounter. VA hospitals have them....but Uma is not a soldier in the conventional sense. Core Health has one of these specialists and it has been the best thing for Uma throughout her stay here in Dripping Springs.

If a brain injured person can't think clearly, doesn't accept herself or feel that she's worth the effort then no amount or quality of hand, speech, and physical therapy is going to be of any use. This was a hard and a difficult lesson to learn - for both of us. But, using her markedly improved capacity for speech, Uma expresses these things in so many words. She is not holding her pain at arms length anymore. Humans don't usually do this until they are good and ready. She is both.

In terms of post-stroke reorganization, it's now thought that Uma might be approaching the half way point - just as she approaches the 5 year mark of her burst brain aneurysm. As her first neurosurgeon in NY said, "...what she has going for her is her youth."She will be doing something in terms of therapy for many years. It will always cost a lot of money and we will always try to find both the money and the best thing for her.

Core Health was the best thing for her for most of 2011 (late April 'til now). When we drive home mid-January we'll stop and see my brother (Happy Birthday Wayne!) in Albuquerque and then see the Grand Canyon. I've been there a couple of times but she has never seen it. I can't wait to see her reaction.

There is nothing on earth that can contain the amount of love and support that has come from all of you for Uma. It's not something you can hold inside. It's too big for that and it has spread too far. It's all over the place now. I hope a great portion of it finds its way back to you this holiday season and beyond.

A totally easy way to donate, just click this button:

GOAL

Goal: Raise $80,000 for Uma's neuro-therapy

Currently raised (as of 9/13/11): $52,063.18!!!

THANK YOU to current donors!

(Please let me know if your name is missing & I'll fix that. Or if you want me to add a spouse's name, etc. We want to make sure to thank all of the amazing generous people who have helped out! Thank you! -- erik)

Aaron Case

Aaron Lindberg

Aaron Potter

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Adam LeBow

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Aida Kattan

Aimie Billon & Erik Sorensen

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Alison Goldsmith

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Ann Erb

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Anna Khaja

Anna Magnuson

Anna Massey

Anne Field

Anne Hothem

Anne Montone

Annie Weisman

Anonymous

Anonymous

Antarctica Film Arts

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D Michaelsen

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Rosie Tisch

Roy Norris

Roy Norris

Russell Boast

Russell Edge

Ryan Templeton

Sabrina Bernasconi

Sabrina Cheng

Saleh Kuba

Sam Given

Samantha Chagollan

Sara Hunt

Sara Pratter

Sara Robinson

Sara Shirrell

Sarah Armstrong

Sarah Bailey

Sarah Dragswiek

Sarah McDowell

Sarah Scott

Sarah Taylor

Scott Beardsley

Scott Hiltzik

Sean Akers

Seth Mason

Shannon Ggem

Shapla Choudhury

Sharon Higashi

Sharon Stahle

Sherry Angel & Joe Bell

Shirley Anderson

Sian Heder

Siobhan Vivian

Sissy Boyd

Siva & Dharshi Sivakumar

Sophia Sahaf

Staci Roberts

Stacy Paris

Stefanie Boose

Stephanie Howard

Stephanie Schroeder

Stephen Babbington

Stephen Serpas

Stephenie Hawker

Steve & Debra Bass

Steven Bornn-Gilman

Steven Levy

Stuart Fox

Studio One Hundred

Sudha Balasubramaniam

Sue Melton

Susan Beeson

Susan Matheson

Susan Swinburne

Susan Watkins

Susannah Blinkoff

Swell-A

Tad Coughenour

Talia Green

Tamara Feist

Tammi Fuller

Tanya Browkaw

Tara Joyce

Tara Karsian

Taryn Rioseco

Tatiana Torres

Teal Garrels

Teresa Santilena

Terry Plank

The Dialect Coach

The Pragmatic Hybrid

Thea Nelson

Thom Cagle

Thomas Smith

Thulasy Balasubramaniam

Thyra Heder

Tim & Cathy Pellegrini

Timothy Sanders

Tina Miller

Tina Poppy

Tom Fitzpatrick

Tom Parker

Tracey McAvoy

Tracy Fine

Tracy Young

Trina York

Trixze Smith

Tyrell Shaffner

Valerie Charles

Valerie Powell

Vera Chok

Veronica Abreu

Victor Patterson

Victoria Shaskan

Virginia Melin

Wayne Ballinger

Wendy Harrison

Whistler Enterprises

Will Watkins

William & Mary Crotty

William Sheets

Wordspace

Yasuko Schlather

Yoon Lim

Yoon Lim

Yoon Lim

Z Dewart

Z: email Erik at dimsumday@gmail.com if you prefer to be listed as Anonymous. I'm trying to keep this updated in as timely a manner as possible, but if you don't see your name here yet, I will update soon. THANK YOU!